Patient Data

Using Your Data – Health and Social Care Information

NHS England is commissioning a modern data service from the Health and Social Care Information Centre (HSCIC) on behalf of the entire health and social care system. Known as care.data, this programme will build on the existing data services such as the Hospital Episodes Statistics (HES) service, which was launched in 1989, and expand it to provide linked data, that will eventually cover all care settings, both in and outside of hospital.

Under the Health and Social Care Act 2012, NHS England has the power to direct the HSCIC to collect information from all providers of NHS care, including general practices. The specification of the data to be extracted by GP practices were considered by the Joint GP IT Committee of the British Medical Association and the Royal College of General Practitioners, as well as an independent advisory group. Details are available here:www.england.nhs.uk/caredata

What kinds of information sharing can you object to? There are two types of information sharing you can object to:

You can object to information containing data that identifies you from leaving your GP practice

You can also object to any information containing data that identifies you from leaving the HSCIC secure environment. This includes information from all places you receive NHS care, such as hospitals.

Care.Data

Every household in England is receiving the leaflet ‘Better Information means better care’ during January. The leaflet raises awareness amongst patients about how their information is used for purposes beyond their direct care, including for the care.data programme. There are a number of resources that provide additional information:

Patient Information Line – (0300 456 3531) The national patient information line went live on 6th January 2014.

The five most common questions have been:

Can I change my mind? (FAQs 12)

I can’t get to my practice to object, what should I do? (FAQs 10)

How long have I got to decide if I want to object? (FAQs 11)

What is the secure environment mentioned in the leaflet? (FAQs 3)

Do I have to do anything if I want my information to be used? (FAQs 17)

Download the Patient FAQs for more information. Further information is available from the National Patient Information Line (0300 456 3531). Accessible formats including Braille, audio and large print are available from the patient information line. In addition, large print and audio formats are available from the patient website.

Misconceptions

There are a number of public misconceptions about how data will be used. These are mostly due to a confusion around the different types of data that will be released by the Health and Social Care Information Centre (HSCIC).

To make it easier the different types of data will be referred to as:

red (personal confidential data)

amber (pseudonymised data)

green (aggregated or anonymised data)

Each “colour” of data is protected by a different suite of privacy safeguards. For an explanation, see this blog by the Chief Data Officer.

For the avoidance of doubt:

Data will not be made available for the purposes of selling or administering any kind of insurance

Data will not be shared or used for marketing purposes (FAQ 23)

NHS England and the HSCIC will not profit from providing data to outside organisations (and certainly not your GP!)

Privacy Impact Assessment

For patients who wish to understand more about how their data is protected, a Privacy Impact Assessment has been published for the care.data programme. This document provides details about the privacy implications of the programme (both negative and positive) and explains how each risk is being mitigated. In addition, the HSCIC has published a Privacy Impact Assessment 2013 for all the personal data it processes, which includes the data extracted for care.data.

Summary Care Record

There continues to be some confusion about the differences between the Summary Care Record and the use of data for purposes beyond direct care. For details, see FAQ 14 and the final section of this guidance.

020 8748 7574

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Monday

8:00am - 6:30pm

Tuesday

8:00am - 6:30pm

Wednesday

8:00am - 1:30pm

Thursday

8:00am - 6:30pm

Friday

8:00am - 6:30pm

Saturday

Closed

Sunday

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Out of Hours

111

Data Protection Act 1998

The Practice fully complies with the Data Protection Act 1998. Under the Act patients have a right to be informed whether personal data about them is being processed and have the right of access to the data. Patients can review the data processed and formal applications for access should be made in writing to the Practice Manager. A fee may be charged for this.

You have the right to OPT-OUT

To opt-out, simply download and complete your details on the form; then post it or drop it in to your GP Practice, marked for the attention of your GP.

If you wish to OPT-OUT your children or other members of your family for whom you are responsible, you can add their details on the back of the form.

HSCIC Website

Who we are and what we do

The Health and Social Care Information Centre (HSCIC) was set up as an Executive Non Departmental Public Body (ENDPB) in April 2013 . The Health and Social Care Act 2012 sets out our responsibilities, which include:

Collecting, analysing and presenting national health and social care data
….more

Animation

1. Explain the care.data programme2. Remind patients that they have a choice

Note that subtitles are available

Enhanced Data Sharing Module (eDSM)

The GP practice or clinical service you are attending uses a secure computerised records system, which allows clinical staff to share information in your record to ensure the best care can be provided to you.